Category: RSDS General Info

This piece was written by Jenny Picciotto and first appeared on ForGrace.org.

My journey with chronic pain began with a repetitive stress injury to my foot from playing tennis. Tennis was new for me, but it was an activity my husband had loved his entire life. With kids approaching college, I saw it as a common interest that would sustain us into our lives as empty nesters. I took up the game and dreamed of playing doubles together well into our sunset years. We joined a social tennis club where I found friends and developed a love of the game.

My retirement fantasy was not to be. I developed pain in the ball of my foot that felt like bone grinding into the ground. In 2010 it got so bad I couldn’t put weight on the ball of the foot and had to stop playing tennis. I could barely walk. That was the start of a year and a half of conservative treatment. After orthotics, ultrasound, cortisone injections, and PT, I was referred to an orthopedic surgeon in November of 2011. He promised I’d be back on the tennis courts in three months.

That’s when my life changed forever. Within weeks of surgery, I had all the classic symptoms of Complex Regional Pain Syndrome (CRPS); extreme swelling, swift color changes, and intense burning pain. Despite a quick referral to a pain management specialist and aggressive treatment, my condition deteriorated.

CRPS is a chronic and sometimes disabling neurological pain disorder; characterized by a cluster of symptoms including swelling, changes in blood flow, activation of immuno-inflammatory agents, and intense burning pain. The skin may turn red or blue, and get shiny. There can be muscle weakness or spasms. The muscles can lock into rigid contraction. The affected area can be so sensitive to touch that a light breeze or immersion in water causes intense pain. Then there are the changes in temperature, swelling, sweating, and insomnia. Even common sensations like sound or light can trigger pain. It does not follow a nerve path, but presents regionally in a stocking and glove way.

It took about a year for the burning, prickling, icy pain to spread from my foot to the rest of my body. I had tremors and spasms, joint stiffness, and sensitivity to sound and light. Although the doctor prescribed an extensive list of medications and performed numerous procedures, I could no longer work and spent most of my time in bed. I needed a cane to walk short distances and an electric cart in stores.

In addition to pain, I suffered from isolation, anxiety, depression, stress, and grief. Afraid of the strange sensations in my body, I worried about the future and grieved the loss of everything I knew as myself. Treatments weren’t helping, and my pain specialist held out little hope of improvement. I felt trapped in my body, an unsafe and hostile environment, and lost in a maze of emotions.

Working with a skilled pain management psychologist transformed my relationship with pain. He had lived with chronic pain for many years and shared my interest in Buddhist thought. His mantra was that when we resist our feelings we get stuck in them.

What he asked me to do was counter intuitive. Rather than tensing up and resisting, he wanted me to turn toward the pain. To acknowledge, accept, even embrace, everything I was feeling. It was terrifying and only possible for brief moments. Stepping out of the shower I’d pause to let the pain wash over me, then step off the bath mat and draw my protective shield back on.

We are often our own worst critics, agonizing over parts of ourselves we wish were different, better, less flawed. Living with high impact chronic pain brings a whole new level of criticism to our inner dialogue. For many, the struggle to come to grips with what has happened and how it has affected us hurts as much as the pain. But our thoughts and feelings affect our nervous system, and emotional suffering generates physical tension that can make pain levels rise.

Facing pain is complicated. Sensations and our thoughts about them are knitted together. As I developed the capacity to be with my experience, without judging it or pushing it away, it got easier to untangle. Separating the pain from my thoughts about the pain created a space between the sensation and my reaction to it. In this space I cultivated compassion for my suffering.

When I could catch the specific words I was thinking, they seemed to lose their power over me. Instead of resisting them I was free to observe them, and compare them to reality. Always and never are usually untrue. I discovered that under my thoughts layers of undigested feelings lay hidden.

Over time, this practice helped me tune in to my body, identify triggers to my pain, and process my grief. By acknowledging and accepting the suffering I felt alongside the pain, I was no longer consumed by it.

Over the years, my condition has improved. I still have severe pain and physical limitations, but now I focus on living with the pain, not getting away from it. Pursuing my interests, writing, cooking, playing piano, and facilitating a support group, brings meaning to my life. The future is uncertain, but that is simply the nature of being alive. We can only live one moment at a time, not knowing what the next might bring.

I am just at the start of my journey with cancer. In September of 2019 a mass was discovered during a routine mammogram. I have dense breast tissue which can mask cancer, so my gynecologist ordered 3D tomography. A week later I was called back for a recheck and ultrasound. It was just another day, then it wasn’t.

The weeks between testing and results were surreal. My husband and I felt suspended between alternate realities, contemplating the fact of our mortality.

I am the poster child for early detection. My invasive ductal carcinoma was small and had not yet spread to my lymph nodes. After the biopsy and genotyping I learned that my chances of survival are high. Treatment would include surgery, radiation, and hormone therapy.

Since then I have mustered every skill I have to manage the fear and anxiety that accompany this disease. Accepting that it would be unpleasant and unpredictable, I did my research and made a plan. I would focus on each intervention one at a time, crossing each bridge only when I reached it.

I practiced noticing and acknowledging my feelings and fears. Noticing created space to explore, problem solve, and choose what I needed in that moment. Sometimes it was information. Sometimes it was laughter, or a distraction. Other times, it was reassurance. When I was in touch with my thoughts and feelings, even those of terror and depression, it was possible to soften and accept instead of tensing and pushing away.

Still recovering from treatment, it’s unclear what my new normal will be. I don’t know if the lymph edema and pain will resolve, or what side effects I might have with long-term hormone therapy. The future is full of uncertainty.

But the truth is that we all live with a high degree of uncertainty, and much of our suffering comes from fighting with what is. None of us are guaranteed safe passage through any given day, and many people suffer silently with invisible pain.

I don’t believe that things happen for a reason; that is a slippery slope toward guilt and blame. I believe that things happen, and when they do, we determine what those events mean to us. We are all together on the same journey, experiencing the incredible beauty and tender frailty of this terrific and terrifying journey called life. Let us be kind to ourselves and one another along the way.

Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.

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Written by Sue Racaniello for the RSDSA blog.

My body used to walk through life unaware of it’s surroundings

It was a vehicle to get me to point B

It’s supposed to be that way, or is it?

Should I feel every nuance around me?

Every whisper of the wind on my hand, every inch of earth beneath my foot?

I’m still trying to sort this out

And figure out how to go about

I have to strike a balance

To stay in tune with people around me

While I control the pain inside thee

Each step with my foot

Or grasp of my hand

Transports me to a no mans land

I hear people talking, And I do reply

But I won’t recall

Because I wasn’t focused at all

The next phase of my recovery

Will be to overcome, and act on my discovery

I’m not a quitter

And I refuse to be bitter

I will integrate the two worlds I live in

One of pain and the other, amongst the living

I cannot let them collide, I gently need to set the divide

I may not feel this way tomorrow

I may just be filled with sorrow

But for today I’m on my way

Please consider making a donation to RSDSA today!

Written by Destinee Macklin for the RSDSA blog.

How and when did you develop CRPS/RSD?

On May 11, 2018, I was the passenger in a vehicle we were using to conduct patrol. During a routine traffic stop, a suspect bailed out of the passenger side of vehicle armed with a handgun. As I excited my vehicle to pursue the suspect, I took two footsteps and saw a headlight. I put out my left arm in fear at which time I was struck by a truck.

I was able to gain my balance, continue to pursue the suspect, place him into custody, and retrieve the handgun.

I was sent to shock trauma and six months later, October 2018, I was diagnosed with Complex Regional Pain Syndrome Type 1.

What has daily life been like since your diagnosis?

It has been such an obstacle, but the key to being a strong Warrior is the mind. If you can control your mind, you can control how you react to the battle of CRPS. I have since had two spinal blocks and a Spinal Cord Stimulator placed inside of me to include a cervical wire. I have had to change so much from become a healthy detective to a person struggling to walk and complete normal activities.

What is one thing you wish those without CRPS/RSD could understand?

That sometimes I do not have the energy to be who I used to be. That I am now a new person who has accepted who I am and I will not always be able to make every function. That sometimes I need alone time to gather my thoughts and emotions and that there are moments where I may feel like a burden. I wish I could be who I used to be, but unfortunately that is not an option. I am going to be better than I used to be… while battling CRPS.

What advice would you give to newly diagnosed Warriors?

Find something that comforts you. I started sewing two months after my diagnosis which has led me to become a fashion designer. When I sew, it is almost as if I feel no pain. It is a positive distraction that gives me hope as I hope to spread awareness with every design I complete.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Continue pushing, continue fighting. You have made it this far and for that I am proud of you. You are truly inspiring to others who are fighting.

I would love to know what activities or treatments have helped you find temporary or long term relief?

As I stated, I enjoy sewing. It is a craft that allows me to use my limbs more and stay active. Honestly, the amount of concentration it takes to assure that I do my project correctly is an amazing temporary distraction.

Anything else you would like to add?

If you would like to learn more about sewing, need mental encouragement on days when times are rough, or would like more information on the clothing brand I am creating to raise awareness for CRPS, feel free to contact me on Instagram at @MackTheTailor or via email.

Please consider making a donation to RSDSA today!

Written by Sue Racaniello for the RSDSA blog.

In a flash A life can change

In a flash, the flame ignited

In a flash, my world divided

Minutes to hours, hours to days

My mind is unable to leave this maze

Days to weeks, weeks to months

Time is racing yet I feel so stuck

There are moments I can’t even speak

And that’s when everything feels so bleak

Weeks to months, months to a year

I go outside but still with great fear

The flames have subsided, but the pain is still here

I’ve made great progress nevertheless

And now it’s time to reassess

I promise to my family and to myself

That I must never acquiesce

I patiently wait for remission

But until that day comes I’ll attach therapy with ambition

There was a brief moment where my body went quiet

And in a flash

My mind changed its diet

I saw the moon and stars like never before

And suddenly realized I walked through a new door

I will mourn the Sue of old

But now I need to create a new mold

I probably won’t be as bold

And maybe I’ll even do as I’m told

I’m in charge, I’ve always been

I just need to get out of this spin

It’s a new journey for this new Sue

And I know I have to push through

I guess I was meant for this CRPS

To appreciate all that’s important and get rid of life’s stress

I choose to almost be thankful

Because without a flash, I may have never been tranquil

Please consider making a donation to RSDSA today!

Written by Sandy Geddes for the RSDSA blog.

I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!”

I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I could train with a world champion coach. Why did I have this goal? Because I loved to slalom ski and loved the challenge. Shortly after my birthday, I spent two weeks windsurfing every day (yes with the broken toe taped up good) and going barefoot. By the time we returned home I could hardly walk. I scheduled my surgery and my life changed forever. 

How and when did you develop CRPS/RSD?

In March 2019 I had surgery to repair my left foot. It involved removing a bone fragment at the metatarsal joint of my second toe, rebuilding and reattaching the ligament that tore when I broke the toe, doing a bone graft to fill the joint space to make it more stable and excision of a nerve that I had crushed. I knew something was wrong when I had so much burning pain and pressure in my cast. I could see that my toes were black & blue. The PA in charge of my post-surgical care was not concerned. I did not know what was normal since I had never experienced a major surgery before. By the time I was diagnosed two months after surgery, my lymphatic system was not working correctly, and I had lymphedema from my foot to the bottom of my shoulder blade on my left side.

What has daily life been like since your diagnosis?

Challenging with highs and lows. I spend a good portion of my day managing this disease so that I can live life on my terms. If I do something big like prepare for and host a dinner party, I know that I will suffer severely for a week following the event. Everyday I complete exercises like rebounding, calf raises, and desensitizing to help me throughout the day. I also do one on one restorative yoga twice a week and a Pilates reformer class twice a week. My OT does manual lymphatic drainage and myofascial release on my left lower quadrant twice a week. I have done many other therapies that have helped including chiropractic with Burleson Chiropractic and laser and hyperbaric oxygen therapy.

The only prescription I take is Cymbalta for neuropathy. I take vitamin C, magnesium and alpha-lipoic acid. I am working on improving my eating habits by avoiding inflammatory foods and loading up on anti-inflammatory ones. I had my first major setback a few weeks ago when I developed an ulcer in my mouth. My dentist chemically cauterized the ulcer and prescribed magic mouthwash to numb the area. By evening I was in more pain than I ever believed possible. I took hydrocodone for two weeks and that barely touched the pain. Neither my dentist nor the oral surgeon he sent me to understood the level of pain relative to the problem. Luckily my nervous system is starting to calm down.

What is one thing you wish those without CRPS/RSD could understand?

That even though I look physically fine and I am back to windsurfing and wakeboarding I still struggle every day with pain and swelling. That even though I do not always look swollen my nervous system still tells me that I am. That many days I feel like my hands and feet are inflated surgical gloves and that my fingers and toes want to shoot off like rockets. That most days it feels like I am standing on rocks or relief when it is only feeling like bunched up socks.

What advice would you give to newly diagnosed Warriors?

Find a physical therapist and an occupational therapist that understand how to help you. This has saved my life. I could not walk for three months after surgery. It took two months for me to be diagnosed because my post-surgical care was with the surgeon’s PA who did not take my concerns seriously. He said I was claustrophobic when I described the burning pain that felt like my cast was cutting through my leg. At my two month follow up, when I should have already been walking, I could see the concern on my surgeon’s face when he diagnosed me. He said get a good PT & OT close to home immediately. That was at the beginning of May 2019. Once I began PT, I started walking within a month. I was finally released from PT when they could no longer challenge me with what I could do physically. I started OT at the same time and still get treatment twice a week 10 months later and will continue for the foreseeable future.

I could not be as positive as I am today without stress management therapy. I found someone who is non-judgmental and compassionate to pour my heart out, cry, and laugh with. It helped that she is not personally invested in me. She was a stranger when I met her. She helped me set goals and meet them when I felt like I had zero control of my life. Due to my therapists and my perseverance I got my life back and felt sane again. After several months, my husband said Sandy was back. I could finally laugh again and focus on things besides my condition.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Since I know it manifests differently in everyone, I do not judge anyone’s journey, but I do know that for me movement is the key to my successful management of this disease. Every day I push through the pain and swelling. I do whatever it takes each day to make it ease up even though I know it is temporary and I will have to get up the next day and the next to do it all over again. Try every therapy within your reach and do not give up!

Please consider making a donation to RSDSA today!

Written by Kathleen Derby for the RSDSA blog.

Please consider making a donation to RSDSA today!

Written by April Ball for the RSDSA blog. 

How and when did you develop CRPS/RSD?

I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.

I was told that there was nothing wrong with me and that it was just the herniated disc but they could not do surgery because it was not pressing on my nerve enough to deem surgery. I was told I had bursitis and they gave me a Cortisone shot for it. That shot only made me feel worse and walking worse. At that time I did not know I had RDS/CRPS. I was told I had elephant leg when my right leg and foot were swollen and red/purple in color. The doctor who told me I had elephant leg said it was caused from me having a hysterectomy in 2015. I looked him straight in the face and told him he was crazy and got up and walked out of his office. I made one appointment with the pain doctor to see what else could be done. We talked about what was going on and my symptoms and that was when he diagnosed me with CRPS. That was in February 2018.

What has daily life been like since your diagnosis?

My CRPS, which started in my lower back and right leg, has now spread to about 90% of my body. Therefore, daily life is a struggle. I have full body spasms. The spasms wake me up at night. I lose my balance just walking. I am always dizzy. I wish I was able to get up and go to work like I used to. I stay tired all the time. I am not able to stand more than just a few minutes. I have trouble eating and holding a fork or spoon. My appetite has changed because of having CRPS in my stomach and intestines.

What is one thing you wish those without CRPS/RSD could understand?

Everything about the syndrome. Please research and learn everything you can. Ask questions about this disease.

What advice would you give to newly diagnosed Warriors?

Keep a diary and take pictures of your flare ups to show your doctor. Do not be afraid to communicate and ask questions with your doctor. Be your own advocate because no one else will.

What activities or treatments have helped you find temporary or long term relief?

With me, it seems the more active I am the more it hurts me. I cannot walk long distances and now it is getting to where even walking a short distance hurts me. I have a Spinal Cord Stimulator, but it is not giving me the relief that I was hoping for. My right leg still has unbearable pain and spasms about 75-90% of the time when I do something. I cannot even drive because of it. I have to sometimes lie on my left side and that does not always help. And even muscle relaxers and nerve pain medications are not 100% effective.

Anything else you would like to add?

If you have a support system, no matter how big or how small, as my husband tells me, take that circle and roll. I have lost family because of this disease. They do not understand it. They do not want to take the time to understand and support me being sick, and I do not want that. I want people in my life that can accept the fact that I have a disease that there is no cure for and I need their support. I told them if the shoe was on the other foot, I would support and advocate for them. All I got back was grief and negativity.

Please consider making a donation to RSDSA today!

Rare Disease Day is held annually on the last day of February to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long.

Check out our daily virtual activities and join us if you can!

Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like.

Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share.

Wednesday: Join the #SpoonieChat on Twitter at 8p ET to connect with other rare disease warriors. #SpoonieChat was created by Dawn M. Gibson in 2013 for Rheum patients. It has now become a weekly chat for chronic pain patients.

Thursday: Each one, teach one: Share advice for new chronically ill patients and use the hashtag #RSDSArare.

Friday: Connect with another rare disease warrior online or in your community.

Saturday: If you are in the South Haven, MI area, join us for Leap For A Cure at American Legion #49 at 6p.

Please consider making a donation to RSDSA today!

Written by Judi Soderberg for the RSDSA blog.

How and when did you develop CRPS/RSD?

For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS.

He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine was twisted so the nerves all sat at the top, so when he removed the anterior and middle scalene muscles, he basically removed all the protection the nerves had, and from there, scar tissue was formed which rubs continuously against those exposed nerves. This created injury to most of the nerves that radiate from the brachial from the neck on down to the fingertips, with the nerves to the clavicle involved as well.

When I went back to him in severe pain, he decided releasing the pectoralis minor muscle in two places would relieve the pressure on the ulnar nerve. This just gave me more scar tissue to rub against the ulnar nerve constantly as well. This happened in December of 2008 and February of 2009. The pain has been progressive ever since. And of course, the doctor left his practice here and moved out of state so he could not be found.

What has daily life been like since your diagnosis?

I finally had to give in and go on disability in 2014. My life has been a regimen of pain medications and pain. My house has fallen apart because I cannot clean like I used to. Travel has become difficult due to the pressure on an airplane. Driving has become increasingly difficult since I drive more with my right hand than my left, and my right side, from neck to fingertips, has become fairly useless, movement of any kind causing excruciating pain so anything I do is limited in scope.

What is one thing you wish those without CRPS/RSD could understand?

I am not pretending. You may not be able to see it (unless you are in my company for a long time and can watch as my tough guy exterior crumbles), but it is very real, very debilitating, and not something I can do anything about. I try to give people a little taste of what I am feeling by having them press that indentation between your neck and your clavicle, press hard, and they will hit the brachial plexus and get a zing from it. Multiply that zing by a thousand, and maybe you can almost know. But either be understanding and help me out now and again, or go away, because it is hard enough to deal with pain all the time without having to also deal with the prejudices of people who do not suffer this kind of pain. Do not look at me like I am a heroin addict when you notice the amount of pain medications I am on. I wish I could get high from them, but they barely even touch the pain. So, do not be so judgmental.

What advice would you give to newly diagnosed Warriors?

If the injury is new, do the physical therapy. There are methods out there to help reduce some of the pain. And if the injury is new, it is possible to build up the muscles that protect the area so you can minimize the pain… at least for awhile. And find a good pain clinic. These days pain management doctors are terrified to give out medications that actually make a difference, so try to find one that specializes in injury and CRPS. Look out for the ones that specialize in Fibromyalgia. They tend to not take you seriously and they do not recognize the difference between the two disorders.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Find something you love to do that does not cause you too much pain and takes up hours in the day so you can enjoy life. I found that I am a pretty darn good developmental and line editor for fiction, particularly Fantasy/Urban Fantasy and PNR books. I have many authors that use my abilities and I am loving every minute of it. Particularly when a book comes out that I worked on that gets great reviews. It is a new love in the business world. I am creating a small business that I will make a minimal amount of money doing, and I will be loving every minute of it. That is what you need to do to take your mind off the pain. And use Voltaren! It is a lifesaver when the muscles get so tight they cause extra pain by pressing on the nerves.

What activities or treatments have helped you find temporary or long term relief?

Again, Voltaren. I will scream that gel from the rooftops if I could just to get pain sufferers to try it. Activities, well, outside of a hobby you like that will not kill you with the pain is great, and I read, incessantly. Non-stop. Takes my mind way far away from my own issues.

Anything else you would like to add?

Living with constant nine on a 1-10 scale pain is hard enough. The government interfering with the pain medicine regimen I have been on for over 20 years (some from the 10 before the surgeries, some from the 11 since the surgeries) just makes things worse. The fear is overwhelming that my doctors will start being forced to follow the ridiculous reductions of opioids that the DEA is pushing on the pharmas that distribute them. They should just be working on the street drugs that are causing all this insanity.

I am terrified of the amount of suicides that will follow any serious reduction in availability and restrictions on distributing prescriptions. People in serious chronic pain will see no alternative but to end the pain in the only way available to them: suicide. I am just trying to stay strong and hope my doctors (who are wonderful, by the way) will never completely bow down to the horrid restrictions that the government is attempting to impose on the doctors. Because, without my meds, I do not know what I would do. I know getting out of bed would be more than I could handle. Sidebar: I cannot sleep in a bed anymore, which means I no longer sleep with my husband. I have to sleep on a recliner, and even that is beginning to cause serious issues. I only sleep an hour or two tops at a time, which means I am sleep deprived all the time. That is not the best frame of mind to be in should my doctors change their policy.

Please consider making a donation to RSDSA today!

Written by Marisol Pérez for the RSDSA blog.

Please consider making a donation to RSDSA today!